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My SOVALDI/OLYSIO Treatment Experience!

Hi!  I began my treatment with Sovaldi and Olysio 21 days ago, and I'm doing great.  I have not had ANY side effects, and simply feel normal, or perhaps a bit more clear-headed and energetic.  I had my two week labs done, and the results have absolutely amazed me -- all results (ALT, AST, etc) are within the normal range, and my viral load (formerly 789000) is undetectable!
I so hope that you all can get this or one of the newer treatments coming out this summer.  I was treatment naive, having learned in 2006 that I was hep-c positive, from a blood transfusion I'd received 25 years earlier.  Everyone, please remember, if you had a blood transfusion before 1992, you should be tested for Hepatitis!  I'm very lucky to have a top doc and great insurance.
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Avatar universal
I am so glad there is someone besides me having side effects with the S/O. Not glad you have them but just that someone else does. I only know one other person who has had a hard time.

I start my 6th week tomorrow with Sovaldi and Olysio and have felt like crap since the first week. However! I am undetected and all my labs are normal -- something I have not seen in many years. So, I stick with it in spite of terrible fatigue and aching and being disoriented off and on. I think if I had still been detected I might have quit at one point.

Anyway. Please do not quit. I can not even begin to imagine working and taking care of kids but I'm 67 years old. Take days off before even considering stopping the S/O. Just a little while longer Tanya.

Oh, and don't let your doctor bug you. Mine doesn't even acknowledge me. :) Sometimes I wonder if she still works in the same clinic. Seriously.
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Avatar universal
Yes !!! I felt great at the beginning. About 7 weeks into it, I started feeling miserable. I am exhausted all the time. Wake up in the mornings feeling good and exhausted by the time I get home. I have a 6 and 7 year old and I am very forgetful. Homework and projects and stuff. I am detectable, but really want to quit. My doctor treats me like I am dumb and that these aren't side effects of the meds.
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Avatar universal
I am so glad that you posted this. When I tell my dr. my side effects, which are similar to yours, she looks at me like I am stupid and tells me it's not side effects of this med. I e-mailed her back and forth and finally just asked her where I could find information about these meds. She told me that the only side effect is rash and itching and ended it with an !. Needless to say, I am done talking to her about my concerns. Going to get my blood work and that is it. I have 22 more days and I really just want to quit. Working full time and having a 6 and 7 old is tough. I was starting to think I was crazy. Thanks.
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Avatar universal
Deb,

Don't wait for anybody to tell you what to do ....go for Sovaldi/olysio treatment...if you have an insurance call the companies yourself (Sovaldi and Olysio)  and talk to their reps...they are very professional there...directly...
and any one of your GI doctors should write a prescription...especially if your platelets are low and you already have cirrhosis and your AFP is elevated as well I bet...
they should treat you now.....the insurance should pick it up.... Sovaldi/Olysio is a miracle drug!
If you don't have an insurance call them now anyway and see what they can do for you. Good luck!
Post here again and let me know the results please
Helpful - 0
317787 tn?1473358451
Hi there, it could be the doctor meant to say that Incivek and Victrellis are the older drugs even thought they were just approved in 2011.
I think you should post your question up at the top, you will get more responses and more help and advice that way.
As you can see here many are doing the S&O so it is not obsolete.
There are so many tx's now the names can get confusing,
Hang in there.
Dee
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Avatar universal
Hi Fred220,

Thanks for asking - I'm doing well!  The fatigue and aches that I commented about earlier went away within a period of several days.  I will be completely done in 5 more days.  My best advice for those on this treatment  -  Rejoice - Stay positive - this treatment is much easier than those with Riba/Inteferon.    Be sure to take the Olysio with food, use sunscreen, and get enough sleep.   All hcv labs have come back as undetectable just weeks after beginning treatment, with all liver values falling into normal ranges.  I hope that your treatment goes really, really well, and that you will soon feel the benefits of being hep c free!
Helpful - 0
7510956 tn?1411671417
Hello, like to know how you are doing with treatment.
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Avatar universal
   Hi my  name is Debbie G.
I am new to the Hep C forum.  I have had Hep C for aprox 30 years.But did not know it until Oct 2013 when I got very sick with sepsis and was in hosp for 5 days. It was there I was told I had hep C with sever liver fibrosis that has now gone to cirrhosis. I have Chronic Hep C Genotype 1A I have been to USF in Tampa, FL, where I was told that the new""miracle drug, which the doctor I went to would not give me the name, will be used with either Sofosbuvir or Simeprevir combp
and the treatment cost is $45,000 and will be out in about 2-3 months. I looked up both those names and they are the same as Sovaldi and Olysio.
Not sure if same dose or which one they will use. Its like a big secret. I have been to 2 gastroenterologists and the one in Tampa at USF Carol & Frank Morsini Health Center said that the S & O are obsolete now and no one will give it to me and for me to wait for the Miracle drug for $45,000. I don't know who he thought would pay for it. I am not a candidate for Interferon and so I am wondering what the cost and the results at the end of treatment. S & O is 12 weeks my Doc told me. I appreciate any input.
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Avatar universal
Now, why didn't I think of that?  Thank you, Kim.  :)
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Avatar universal
Many side effects?  Did you have the issue with the photosensitivity?
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Avatar universal
You've already answered your own question without having to lie.   Just say what you've already said in the above quote "I'm concerned that my precancerous lesions will become cancerous".   There you go Chris, and Good Luck with treatment.           ...Kim
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Avatar universal
I even heard your skin could burn without sun exposure.  You can't even use tanning creme!  That's got me worried.  The Olysio can cause oral and nasal lesions.  I'm concerned my pre-cancerous spots could become cancerous.  So I bought a couple of lightweight long-sleeved cotton shirts and a hat.  I never wear hats, nor long sleeves in the middle of summer.  I live in a small community and my guess is people will think I have cancer.  There's several women here battling breast cancer.  Of all things, I can't figure out what to say if anyone asks me about it, and they will!  And I'm such a bad liar!

Any suggestions on what to say would be greatly appreciated!
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Avatar universal
Ledipasvir, I believe.  My doctor wanted to wait for that one, but then became concerned it was actually not going to be ready to be prescribed in October like we thought.  It could be several more months, so I'm starting on the Solvaldi& Olysio next week.
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Avatar universal
On Olysio's web site I copied down the following:  "rash, itching, nausea, muscle pain, indigestion, photosensitivity (burning, exudation, blistering, oral lesions, toxic skin eruptions) occur first 2-4 weeks, dyspnea, myalgia."  I think you need to take this seriously.  I am.  I don't want anything derailing me this time, 4th attempt at treatment.  Good luck.
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Avatar universal
You're in one of the best places you could be.  Check out Beth Israel Deaconess Medical Center.  They have an entire wing called the Liver Center. All they do is treat and research liver disease, I believe, and mostly HepC.
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Avatar universal
Why couldn't you take the Olysio?  I'm supposed to be starting Solvaldi/Olysio next week.  Was it something about the Olysio, a bad side effect that you couldn't take it?  This is worrisome.  Interferon is not an option for me.  I've also never heard of anyone doing treatment for a 10th and 11th time.  What a trooper!  Next week will be my fourth treatment attempt.  I really hope you reach SVR.
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Avatar universal
Hi Susan,
Thank-you so much!  I hope that this treatment is much easier on you than all the others.  i am rooting for you - it is exciting when your labs come back, and the viral load has decreased or is undetected - please keep us posted on your progress!
Helpful - 0
Avatar universal
Hi Robinh1960,

I hope that you are well.  If you are near Boston, then give a call to MGH .
-R. Chung, and other doctors there are prescribing Sovaldi/Olysio. I was surprised how easily I was approved. It does happen with great health insurance coverage… and I think that major hospitals have an edge on more easily navigating the system to obtain approvals, with experience learned by the sheer numbers they've processed.

There will be more treatment choices very soon - the doctors will spell out all your options.  Don't despair if approval isn't immediate - equal or better treatments are coming soon.  Good luck - I'll be rooting for you!
Keep us posted!
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Avatar universal
I did Sovaldi and olysio, cleared 4/8/12 weeks
Now waiting for 8 weeks post test on Tuesday  to still if still cleared

I have PBC, primary Bilary cirhosis
And hypothyroid, and something else not sure
Said was ok to treat with these meds
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Avatar universal
IFN caused my AI issues in the 90's. What did your docs say about treating with the new drugs and having Autoimmune issues? Did you have lupus?
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683231 tn?1467323017
Hi Susan
I say I didn't have any sides because I basically felt the same before during and after taking Sovaldi and Olysio. I am a 3 time null responder and oh heck yeah interferon and riba are not fun at all. Definitely did have sides with those.

I did have some issues with my left knee. Could be because I am 56 or because of the meds. The knee was a little painful before treating so maybe the meds cause a preexisting joint problem to flair up a little more but my knee was a bit swollen for a while and resolved during treatment. Or maybe I over did it one day. I dunno

Anyway good luck to all currently treating may you all get rid of this blasted virus

Lynn
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Avatar universal
Someone above mentioned arthritis developing in knee during treatment.  Interesting.  My left knee has been hurting almost constant since about 3-4 days into this.  Slight swelling but I am still pushing through.  Susan400
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Avatar universal
Rikeer, you are one of the rare ones. Most people have some side effects, even if it is mild side effects.  Other are hit HARD and have anemia and neutropenia.  you are fortunate.  I am happy for you.  I am on Ribavirin, Pegasys and Sovaldi.  I cannot take the Olyssio and had to do the Interferon.  So, it may make some difference in my experience.  Also, I am FAR from being treatment naive as this is my 10 or 11(lost count) treatment.  I am extremely optimistic though and strongly feel that I will get SVR this time.  Susan400
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Avatar universal
Hi Robin - I concur with Optimist3 - I had a consult and fibroscan at Mount Sinai before starting tx in PA.  Some key staff there were part of the trial team for Sovaldi.  Very knowledgeable and accessible by email if you live outside NYC.  

Best to you.
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